Cardiology Report

Today was Tiernan's first full cardio appointment in over a YEAR!  Crazy!

It was also our first cardio appointment with Dr. Park instead of Dr. Stefanelli or Dr. Obayashi.  We are I am still a little sad that they won't be around, but I think Tiernan loves Dr. P.

 Tiernan has a few favorite things to do at NWCHC:

He likes to chill in the little chair in the waiting room

 



and he has to keep an eye out for the "ambences" across the street at Mary Bridge.

 

 

But this time he really decided to take charge of the appointment from the beginning:

 



He was Mr. Cooperative with the sats check.  They are holding steady at 86. 

 He showed how he can put on his EKG stickers.

 

and then he attached the leads

and finished up by reading his EKG results.  :)

They were unchanged from last year.

 

While waiting for his Echo, he pretended to be Dr. P and took a few spins on the Doctor chair.

 

Next he decided to be a ROCKSTAR in the Echo room:

 



He was so super chill watching The Little Engine That Could that I was able to sit on the comfy couch across the room for the first time since the days when it took both Jason and me to get him to any appointment.  Not that I got to relax for long though, because apparently the tech is able to get pictures in under 20 minutes (as opposed to 45 to an hour) when the patient is not screaming his head off the entire time. 

Results: UNCHANGED from a YEAR ago!  Praise God!

 

And because he didn't need a sugary distraction during the echo, he got one as a reward.

 

He actually dropped that on the floor moments later. 

Luckily, I had brought 2 more so he got a blue one...which landed on the floor as well.

He finally got a green apple dum dum and made that one last until the very end. 

 

Overall, the appointment was fantastic.  I have some new understanding surrounding his leaky valve though.  Because he has an AV canal (hole through all four chambers) he doesn't really have the typical Tricuspid and Mitral Valve.  True Hypoplastic Left Hearts have a small mitral valve.  Tiernan has what is called an AV valve...it is a one valve instead of two and is therefore larger than either individual valve would be.  In addition, because an AV valve is abnormal, they would be faced with the problem of finding a valve big enough to use as a replacement. 

So.  What all this means is that if they cannot repair at the time of the Fontan, it would be highly unlikely they would attempt a replacement.  The point of the Fontan is to take the workload off the single ventricle.  It will do this, but his leaky valve would continue leaking and likely get worse over time causing more stress on his heart anyway.  This means that if the valve causes too much trouble post Fontan, it could mean an earlier transplant listing. 

Of course, this is an example of the the proverbial cart being waaaaay before the horse.  And Dr. P reinforced our mantra:

"We don't know what science and technology will bring in the coming years so let's not worry too much about that now."

 

We will not let this steal our peace.

 

Especially in light of the highly encouraging news regarding the search for a new Chief of Pediatric Cardiothroacic Surgery at Seattle Childrens.  When Dr. Woods left, we were pretty much set on needing to travel to Stanford for any future surgeries since we did not feel confident having Cohen again.  But then Cohen left as well, and hope returned that we could stay local.  But the search is a long (understatment) process and so we've been in a limbo, so to speak. 

But today Dr. P shared a really cool update. 

Seattle Children's is gearing up for the round 2 interviews and 2 of the candidates (maybe the only candidates) are a guy from Dallas Children's with a pretty great reputation and, inexplicably,  

this guy...Dr. James Tweddle.

Dr. Tweddle is the guy Dr. P studied under in Wisconsin prior to coming out to NWCHC.  Additionally, he is the guy Dr. Woods left us to go work with in Milwaukee.  He is one of the top rated Pediatric Cardiothoracic surgeons in the country.  His outcomes with HLHS and Fontan patients is stellar.  No one at NWCHC can explain why he would want to leave what he has at CHW to come to SC but clearly he's etertaining the idea.  Crossables are all crossed. This would leave no doubt about staying in Seattle for the Fontan.

 

Speaking of the Fontan...

They only schedule Fontans for the summer to avoid potential illnesses during cold and flu season.  Because of the weird valve issues, Dr. P seems prone to at least keeping open the possibility of the Fontan taking place next summer.  [cringe]

This all depends on how he is doing in May.  If all is well and largely unchanged then I expect we might wait another year.  But if things are starting to deteriorate, then they will start scheduling caths and surgeries.  [sigh]

I won't lie.  This news sort of dampened my glee a tad, but once again.  It will not steal my peace.

 

Well, after cardio, they sent us over for bloodwork and he continued his amazing superstar behavior and didn't make a peep during the entire thing.  Shocked the phlebotomist as well.  :)  We will hear Monday about his kidneys and liver BNP or Brain Natriuretic Peptide levels.  This is something that is produced in the heart when it is failing.  Today's levels don't matter except as a baseline to which they will compare levels in May or whenever.  A discrepency will indicate need for intervention. 

While at Mary Bridge Clinic following the blood draw, we randomly ran into our old friend Dr. Pickens, GI doc extraordinaire.  He was thrilled to see how well Tiernan is doing and (as per his norm) gushed over my weight loss.  hehehe.  Love him.  :)  That said, I'm not sorry we don't have him on speed dial anymore. 

 

Finally we headed for home but made a stop for lunch and plane watching at The Hangar Inn near our house as a reward for Tiernan's outstanding appointment. 

Happy HAPPY Tiernan.

 

 

 

Oh Say Can He Say...Part Deux

We owe so much of Tiernan's development to Kids At Play Therapy.  He is more or less normal in his milestones now due to Amanda's awesome work with him over the past 2 years.  The most exciting stuff right now is his speech! He is talking up a storm and it is very much due to his work with the Integrated Listening System.  The link will take you to a good video that explains how it all works.  Basically put, it is an iPod with very specific classical music with very specific sound tones and frequencies that take the person through a 12 week (or longer) sequence.  In addition, the head phones include bone conduction.  This, combined with a lot of work on the vestibular system has finally helped to initiate a language explosion.  Every week, following his therapy session, we have been hearing more and more words.  He doesn't say them all consistently, but he mimics most words now.  Until recently he wouldn't do that at all.  He could say words accidentally but lacked the motor planning and control to do so on purpose.  And those words he has down are getting clearer all the time.

FAMILY
"Mama" and "Dada" have become "Mommy" and "Daddy" much of the time.
"Bubba" is becoming "Buhver" which is much closer to "Brother".  :)
When he wants to do something himself, he points to himself and says, "Me. Me."
When he sees pictures of himself (or sometimes Tristan as a baby/toddler) he identifies them as "Neenan" and has even once answered with a very clear "Tiernan" when asked his name.
He knows his "Auntie" and can say "Gramma" and just last night said "Pops" and "Popper" for Jason's dad.  He also made a pretty successful attempt at "Nonni" for my mom.  Must work on "Granda" now.

FAVORITE THINGS
"Eat"
"Eed" (which is Read and difficult to differentiate from Eat.) When prompted, he will very carefully and clearly say "oorrreed"   :)
"Dars" is Cars
"Ink" for Drink
"Ut deez" means "Up please." when he wants to be held.

ANIMALS AND THEIR SOUNDS
"ditty" for Kitty
"doddy" for Doggy
He roars for a lion or tiger.  Makes a trumpeting/whistling sound for an elephant.  He baaas for a lamb and says "Ahrf" for dogs.  Birds say "teetee" and ducks say "kak kak".  A kangaroo is an "op op" (for hopping)

OTHER SOUNDS
Trains say "too too"
Cars say "deet deet"
Santa Claus says "oh oh oh"
Sirens...imagine a siren and you'll know.

RANDOM WORDS
Teeth
Crash
Funny
Haha
Sticky
Aht (Heart)

There are more, but it is difficult to remember all of them.  His "jabber" is much more varied as well.  He says many more sounds. 
We are so excited by his new communication skills. 

In other news, we are considering several options for his "schooling" next year.  Nanny K is still willing to take care of him and help with getting him to and from some pre schools in her area if that is the way we would like to go.  We have thought about developmental pre-school through the school district, but Amanda (OT) feels he would be beyond the other kids there.  His speech is really his only delay at this point and she thinks he would be bored and also wouldn't need to be exposed to the inherent behaviour issues in a developmental program.  The third option is an all in one preschool/daycare near my school.  This one comes with excellent recommendations from several of my co-workers and his heart buddy Alex will also be starting there next fall.  That is a big contributing factor.  Alex has severe eating issues and if my friend Dana is comfortable with this school then I know I would be. 
Like I said, we are still in the deciding process.  Nanny K has been truly fantastic. A gift from God, really.  She was exactly what he/we needed these past 2 years and we are so grateful.  Whichever way we choose, she and her family will always be in his life. 

This kid loves a stuffy

If you have never been to a Build A Bear Workshop store, now is a great time to make the trip.  Everyone knows some little person who would love a stuffed animal made with love just for them.  And for the month of February, you can also donate a dollar to the Children's Heart Foundation.  Unlike a donation to American Heart Association, (where only one penny of each dollar donated goes to CHD funding) you can be sure that your donation will go to supporting research for new treatments and perhaps cures for CHD.

This was Tiernan's first trip to BABW.  We thought he would have a more difficult time in choosing from all the fun stuffies, but no.  It was clear he wanted a "kitty".  Which he said very clearly several times.

****Disclaimer****  These photos are blurry.  Nearly every one of them.  Sorry.  My phone camera is not so good now that Tiernan is so active.  :)

 This is, in fact, the kitty "shell" he picked out. 

Not that you can identify it from the orange blur, but I assure you.  It is.

Tristan was so happy to help Tiernan participate in the creation of "Lucky" the Tabby Cat.  The kind man who stuffed Lucky happens to have a grand nephew with CHDs and is, himself, a 52 year survivor of what the doctors had said was an inoperable brain tumor. 

He was thrilled to know that Tiernan has survived all his challenges too.  :)

Choosing the special heart and giving it a kiss before putting it into Lucky. 

Finished with a hug and a bath and now Lucky is Tiernan's and will be

his special friend to hug and love.

Since arriving home, Tiernan has kept Lucky near him for everything.

 Teaching Lucky his ABCs

 Playing in Lucky's house.

Drinking milk together.

 Heading up to bed.

Reading Madeleine to him in Mommy and Daddy's closet.